Guide to Mental Health for Families and Carers of People with Intellectual Disabilities

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A lot of families disintegrate due to the strain of learning to cope with mental illness and still trying to hold a family unit together.

Chapter 11 - Families and carers

A carer of someone that requires physical feeding, washing etc is considered the norm but the carer of a mentally ill person who doesn't want to get out of bed to wash, doesn't care what they eat etc is not even acknowledged. It can be equally draining and stressful with similar outcomes but one carer is allowed the benefit the other not.

I receive no other assistance, benefits or relief from my most important role as a full-time carer. At present our son lives with us, his ageing parents close to 80 years.

Sepsis information for family and carers of People with a Learning Disability

Where will he go when we are not here or incapable of looking after him? Mental illness among parents can have a range of impacts on children, including:. Some children also bear the burden of caring for an adult with mental illness. This is an especially difficult task given the social isolation often associated with mental illness and can in turn affect the mental health of the child.

These needs cannot be met by increasing capacity within the general service sector. Young carers and young people in families affected by mental illness should be identified as a priority target within children and youth services. They are given very little assistance with their education and mostly leave school early with a very limited and interrupted education. Many are unemployed as a consequence of limited education, poor employment skills and the time-consuming role of carer.

They are ashamed of their situation and are often bullied and victimised by peers who have no understanding of their situation. Submissions noted that the support services currently provided to carers often do not meet the needs of these children. For example:. At other times the respite care is inappropriate, such as a worker sitting on the lounge with the consumer while the child is washing the dishes or making beds.

The committee heard that some families feel unable to respond to members with mental illness, and that stigma and prejudice is evident in some families:. When people admit to having diabetes or depression However, mention that you suffer from schizophrenia and people literally take a step backwards, often as if they expect you to start ranting and raving at them.


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Most members of the Group have faced constant isolation, even from their own family members. My son had been noticeably ill for at least 6 months before I considered taking him to a psychiatrist. Immediate family who now do not live with us were not in favour of this course of action, and I also hesitated as it would then label my son with a very difficult and unattractive condition. No patient is alone. He or she is a member of a family; the two cannot be separated.

The patient's ill health affects the family; it frightens the family. The family's fears, worries, perhaps deprivation, will affect the mind and anxiety of the patient. There are some basic things that we should all know. A lot of research shows that if people with mental disorders are criticised by those close to them, that tends to give them a worse outcome.

Unfortunately, it is a very natural thing for all of us when we do not like the way people behave to try to change their behaviour by criticising them. So a very simple message that everybody in the community should know is that criticism only makes it worse. I have learned over time to draw more and more boundaries.

As I have gotten better with coping , I think I could say, I have learned to put more boundaries between me and my daughter On the other hand, I also know that that means that people will die; I am sure of it, even her. I have had to face that fact and the fact that she needs her autonomy There is massive guilt along with massive grief. So much is determined by the facilitator and how they approach it.

I have a lot of laughter. So on the one side, yes, we need to understand which behaviours are destructive but on the other hand we are becoming so much more powerful because we have got a better life, we have got a better relationship with everybody. I do not mean just with the child but with siblings, peers, work, everything. It is approached very gently. I think it works because I am one of them. If somebody else was to do it, I do not think they would be able to get away with it, quite frankly.

Individually tailored strategies for parenting children with challenging behaviours can have enormous benefits for both the child and the parent:. I learnt how to deal with a child who had learning disabilities and other problems. They taught me how to do that because you cannot as a parent know how to deal with a child who is uniquely difference sic , like my son is, and you need to be taught how to discipline them.

You do not discipline them like you do your other children. I did not know how to discipline this child. I did not know how to teach him.

The child with general learning disability for parents and carers | Royal College of Psychiatrists

This program contributes to early intervention and prevention of mental illness through recognition that not all parents know how to best fulfil their role as a parent and may need some additional assistance to minimise behavioural difficulties in their children. The Triple P program, developed at the University of Queensland, delivers parenting skills through attendance at either face-to-face individual or group sessions, or through self-help course material.

The third great failing of the NMHS is that it did not adequately plan for the increase in demand which is such a significant feature of mental health care at the present time. These circumstances are discussed below. Family environments can be far from therapeutic. The most difficult client base to work with is the family where mental health issues are complicated by drug and alcohol problems.

These families are difficult to engage and workers are often in vulnerable situations where safety is a concern not only for family members but also the worker themselves.

Catholic Welfare commented on one of its programs aimed at diverting families from the statutory Child Protection System:. One of the most significant issues seen in this team is the number of parents presenting with symptoms deriving from complex, long term trauma for which they have received little assessment or treatment. Mental illness is one of the factors adding to the increasing complexity of family life, with a number of co-factors: including drug and alcohol use, intellectual disability, and family violence, it requires skilled, joined-up interventions to improve the outcomes for children and families.

There is no service available to give ongoing practical domestic support and role modelling Further resourcing and training for Family Support Services would greatly benefit the number of support groups and short term specific support able to be offered in particular to families with children between the ages of 12 and 18 years where support and programs of any kind is inadequate.

However the service is not resourced to provide the supports needed for families with mental health issues; there are limited counselling and support groups and long referral waiting times. I can remember every moment of my time in that hospital and every waking moment the events are in my head and affect my everyday life. I have recently been diagnosed with Post Traumatic Stress Disorder and still suffer from depression that is helped by medication.

I am currently seeing an excellent Psychologist and having Cognitive Behaviour Therapy, which helps me cope on a day-to-day basis. However, I am not able to be in a social or work situation without becoming extremely distressed and agitated. I am unable to listen to music or watch television and avoid noise as much as possible.

The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy. Acta Psychiatrica Scandinavica.


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Lefly H. Synthesizing the family caregiving studies: implications for service planning, social policy, and further research. Family Relations. Cohen C. Positive aspects of caregiving: rounding out the caregiver experience. International Journal of Geriatric Psychiatry.

Thomas P. Psychologie et Neuropsychiatre Vieilissement. Wittmund B. Depressive disorders in spouses of mentally ill patients. Social Psychiatry and Psychiatric Epidemiology. Perlick D. Impact of family burden and patient symptom status on clinical outcome in bipolar affective disorder. Journal of Nervous Mental Disorders. Sartorius N. The economic and social burden of depression.

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Journal of Clinical Psychiatry. Jungbauer J. The disregarded caregivers: subjective burden in spouses of schizophrenia patients. Schizophrenia Bulletin. Family caregiving in depression: impact on caregivers' daily life, distress, and help seeking. Journal of Affective Disorders. Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study.

Bipolar Disorders. Amir N. Family distress and involvement in relatives of obsessive-compulsive disorder patients. Journal of Anxiety Disorders. Treasure J. The experience of caregiving for severe mental illness: a comparison between anorexia nervosa and psychosis. Perkins, S.